Tuesday 23rd January, 2018, was an auspicious day for UK Lyme patients, due entirely to the setting up of the Lyme APPG.
We would like to thank the APPG Panel for their time, genuine interest, positive intentions and plans for moving the current stale situation forward. The position for Lyme patients has been ignored for far too long, and we hope there will be plenty of opportunities for useful participation if or when needed.
Representatives from charities and patient groups were asked to attend and deliver short presentations.
One of our trustees, Michael Cook, accompanied by Angela Howard, gave an excellent, brief, historical account and impressed upon the Panel where the focus should lie when it comes to improving – and dare we say – ending the misery of thousands of UK Lyme patients.
From our point of view, these are some of the suggestions we made in need of important attention:
How can the APPG help? By considering the evidence ignored by the NHS and PHE in the development of current NHS/PHE diagnosis and treatment protocols and support the following.
1) Tests with superior sensitivity already exist and should be introduced, also reports from internationally accredited laboratories that use these tests should be accepted as evidence by the NHS. The two tier test requirement must be removed.
2) Ensure that all Lyme testing laboratories are accredited by UKAS to the International Standards Organisation ISO 15189. This should help avoid the problems confirmed by the Parliamentary Health Services Ombudsman investigation of the Lyme Reference Laboratory at Southampton which was closed in 2012.
3) Examine the position of any NICE guidelines which do not recognize the potential complexity of multiple infections, persistent forms of borrelia, poor sensitivity for targeted borrelia species, unknown sensitivity for other species, and individual responses to treatment.
4) Ensure that all front line doctors are trained in borrelia diagnosis and treatment and are able help their patient by treating based on clinical diagnosis, and that with care and patient consent can prescribe appropriate courses of antibiotic with prolonged or repeated courses if they are responding positively.
5) Support research into tests that match the supreme sensitivity of HIV testing and research for optimum treatments for both early and disseminated disease.
6) A need for at least one dedicated Lyme specialist clinic, failing that, a fundamental change in how patients are received and treated in existing infectious disease clinics.
7) The importance for much needed research that will not be buried in unnecessarily long and over complicated routes to clinical settings, so that patients and their doctors are not waiting years for positive and useful treatment options.